MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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shanemcdonald99's picture
Replies 1
Last reply 11/20/2014 - 7:55pm
Replies by: arthurjedi007

Hi

I went through the Yervoy routine around the same time as Ginger in August and September.

I tolerated the yervoy well, but the follow up scans were on the negative side. Sort of bad news / good news type of thing.   Which one do you want first ?

Tumors in the right lung did not grow, but 2 new ones in left lung and a previous one got larger.

Tumors on liver shrank some , but the ones on Pancreas doubled in size. The pancreas acted up for a few days and that sent very sharp stabbing pain throughout my abdomen and back. I could not eat for a week either. I just could not digest anything. That calmed down and is better now. That was some brutal pain that Dilaudid would not even touch. It scared me too.

Bone lesions in spine did not grow and are stable. ( Radiation in January for that)

New tumors showed up in upper arm and somewhere in my foot ( in the bone )

So, my oncologist applied immediately for Keytruda as he feels it was not successful. So that is sort of good because the results in trials of both Yervoy and anti pd1 were very good.

He has 6 people on the Keytruda already and they are tolerating it very well so far as far as side effects.

Of course I will check back with any results from the Keytruda or side effect issues.

peace

Shane

Ginger , hope you are still doing well !

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_Paul_'s picture
Replies 3
Last reply 11/20/2014 - 2:48pm

I am very fortunate to work at a company that is committed to looking after its employees. Several weeks ago I had a lengthy call with a "Benefits Analyst" from our HR department outlining the various options that are available to me for short-term, long-term and life insurance. I was sent a form to complete and I noticed a little check box labeled "Terminal Illness". After another call I was told the insurance carrier, Cigna, provides an "Accelerated Benefit" on the life insurance that pays 50% of the policy if the subscriber is deemed to have less than a year to live, while he or she is still alive!

Of course I applied since the conventional outcome for Stage IV is less than a year. My doctors had to send in some paperwork and low and behold, Cigna approved it and paid!

My hope, of course, is that I live longer but the money is mine to keep regardless of how long I live. I just thought I would post this as maybe it will help another Stage IV patient. In my case I can pay down a bunch of outstanding debt and still have enough left over for my wife and I to go someplace nice and have a nice just-in-case cushion.

On a completely unrelated note, are there any of you that have Diabetes? I am on Yervoy (I get my last bag in a week) and it has inflamed by pituitary. My onc wants to treat this with steroids but I have been told that can significantly spike my blood glucose. I am type II, but recently had to go on insulin because oral meds could no longer control it (coincidentally about the same time I started the Yervoy). Have any of you been in that situation? I will be discussing this with my endocrinologist, but it would be great to hear of actual experiences.

Take care everyone!

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csellers23's picture
Replies 3
Last reply 11/20/2014 - 8:12pm

After a week of so many downs we went to Vandy yesterday and got nothing but good news! The number they look at to see if there are less cancer cells Idk what its called is down and that being sleepy can be because of yervoy and the fever he had is good it means its working and its only his first dose. They said he will get to feeling better and gave him some meds to help him eat. Thank God and all just in time for our sons first birthday. We really needed this good news.

Crystale sellers

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I have loads of moles. No idea how many.  For the past few months many moles on my torso along the sides changed in texture.  Instead of feeling like the rest of my skin, they became rough and dry and almost scab-like.  While lying in bed, I absently scratched at one and it came off in my hand.  No pain, no blood.  Normal skin underneath.  A few others felt similar so I checked in the bathroom to make sure they were really moles and not something else.  Yup, those were my moles.  I peeled off four more the same way before I hit one that was a tad sensitive so I left the rest alone.

I'm already Stage IV with lung mets so I'm not overly concerned about any of these being melanomas, just curious if anyone else has experienced something like this and what it might mean.  I don't see my oncologist again until January.  It's not the first time this has happened with my moles.  The first time I was a teenager (I'm 49 now).  Then it happened again about ten years ago.  And now this is the third time that I can remember.  Anyone have any insight?  Has this happened to anyone else?

Maggie - Stave IV (lung mets unknown primary) since July 2012

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ABELL's picture
Replies 3
Last reply 11/20/2014 - 10:08am

Hello Everyone,

My best friend lost her battle today. 4 months after a stage IV diagnosis and a ten year battle with various forms of cancer. She died in her home, with her family around her & thank God for morphine, not in any pain.

I salute all of you fighting this terrible disease. I will forever be a supporter of melanoma research & will do my part to help find a cure. I promise this to this wonderful woman so many people lost today & I promise this to all of you... Keep fighting, and for the ones we lost, may you all rest in peace.

I love you Tam. You will forverer be in my heart and soul, the sound of your laughter will never fade.

Love always,

Manda

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gaby's picture
Replies 1
Last reply 11/19/2014 - 12:39pm
Replies by: michaelinsocal

Hi, I'm very afraid again. Tomorrow my husband  (stage 3A for now, and 40 years old) has the horrible semester Scan (TAC).

Two weeks ago my husband ended two years of treatment with pegylated interferon. They were two very difficult years .... But he  finally finished the treatment,  now we  have to pray that the beast does not return.  Let's try to find a normal life again.

I have a lot of anxiety for the TAC. Please God help us ...

Regards.

Gaby

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eturner's picture
Replies 4
Last reply 11/20/2014 - 9:34am

Hi guys,

I wanted some opinions on what direction we should take next as far as treatments go for my husband. Here is a little background.... My husband has bone mets on just about every vertebra ( two are broken L1 and L5) sacrum, ribs, femur and on skull, three mets on lung ALSO has very small dark area on liver and kidney.  Last Nov and Dec did 2 weeks of IL2 (failed) then on to Braf Combo drug for about 5 months (failed) started IPI in Sept and just completed that (while on this LDH has DOUBLED :( ..... We are thinking PD1 would be the best bet for him but is there anything else?? ANY ADVICE IS WELCOME!! THANKS!!

EMILY

 

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Patina's picture
Replies 4
Last reply 11/20/2014 - 8:16am

I wanted to share more good news with everyone.  My Mom, who was diagnosed last year with stage IV and brain mets, got the news today from her neuro oncologist. He says that everything looks great with her brain and has given her the OK to start driving in December - unless something unexpected, like a seizure, occurs. - All she wants to do is to start driving again and she is thrilled!

Earlier this month her oncologist said that based on how she has responded to Yervoy (very quickly & all tumors) he believes that she is firmly in the group of people who, at 5 years, had needed no other treatment.  - 92% of responders with durable long term responses, after 5+ years of tracking have had no other treatments and the 8% who needed additional treatment seem to respond to Keytruda ,as well as or better than, they did to Yervoy. So, we know the next step if one is needed.

We can't believe how lucky she's been from the diagnosis to the misdiagnosis to the treatment results. It's been less than a year since she began treatment and just a year since she was diagnosed and we are all very grateful for the terrific doctor's she's had and Yervoy and gamma knife.

I wish everyone had these results now, but am sure they are just around the corner.

 

HISTORY:

My Mom was diagnosed in November of 2013 (age 77) and after seeing 4 specialists (one of which diagnosed her with brain mets that a radiologist "overlooked") and thinking about the options she opted to go with gamma knife radiation for the 3 tumors we knew about and began Yervoy/ipi 4 days later.  - On December 9th, the day of gamma knife, she had 8 treated, but a 9th which was thought to be blood vessels was in reality a brain met and not treated.

In short she had: 2 infusions, got colitis and thrush, had a few hospitalizations due to colitis, finally got the 3rd infusion, got colitis again and then a new radiologist (3rd) treated 17 new tumors in April...   

No seizures, no cognitive dysfunction and EVERYTHING is still shrinking or gone...with no new brain mets and those that were treated are stable and some much smaller or seemingly gone.

---Terrific treatment at USC in Los Angeles with Dr. Wong and Dr. Chang.  

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jennifer83's picture
Replies 2
Last reply 11/19/2014 - 3:12am
Replies by: Kim K, Anonymous

I'm going in tomrrow for a wide-local excision (middle right side of back) and a lymph node biopsy (surgeon said most likely in the armpit area).  I was wondering what I should expect for recovery time?  Should I plan on going to work (desk job) the following day?  Or should I plan on being out the rest of the week?  Any thoughts/advice helps...  Thank you! 

Jennifer

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/18/2014 - 12:05pm

Hi I would first like to say thank you for taking the time reading this and offering any advise. 

Some back ground 

I am 33 female married mother of three. I grew up in southwest arizona. I am Caucasian with dark hair and eyes always tanned easy ALWAYS in the sun. When I was 16 I had a horrible sunburn I was fire red blistered and sick for days again when I was 18 (young and stupid) well my father was diagnossed with melanoma on his back around when I was 16. He also was diagnossed with non Hodgkin's lymphoma when I was 18 and passed away when I was 19. My mother passes away when I was 21 from a heart issues and AIDS (which my father passed on to her) now I have a older brother who has had 3 basil cell and 1 melanoma removed. I don't have any other family besides my brother there are no grandparents aunts or uncles on either side alive so I have no clue on any of my family history. Fast forward to now a year ago I had a itchy raised mole I had since I could remember removed which the dermatologist said was "precancerous" and I need to be seen 6 months. I just had 5 spots removed with shave biopsy a week ago. I am trying to stay calm and wait for the phone call. But I am curios if having 2 close family members and a precancerous mole also all those years in the sun the bad burns and tanning beds should I always think the worse? I also have a high level of anxiety because of my lack of family history/ support. 

Thank you for reading and I am sorry it's long I know I have not been diagnosed, but I just thought this place would be the best of some advise or information. Thank you again 

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/19/2014 - 8:08pm
Replies by: JoshF, Anonymous, JerryfromFauq

I've been Stage 4 for a little over a year. I did Interleukin and went into remission earlier this year. I had a scan a bit ago and the doctor told me I had a shadow but it was infection which the reading radiologist confirmed. I've been struggling ever since as I think I have something wrong with me. I spoke to doctor and he was understanding but also said growth wouldn't happen overnight. I was asked if I have a cough, trouble breathing, chest or back pain. I complained of itchy throat. That could be from many things but I do always have funky ear drainage, stuffy nose and allergy type symptoms. I'm just so nervous and want an chest xray but don;t want radiation. My primary said this could be psychomatic coupled with post nasal issues etc.. What can be symptoms of lung metastasis? I feel fine physically but mentally I'm struggling....anyone else go through this? How do you cope?

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Replies 5
Last reply 11/17/2014 - 9:09pm
Replies by: JerryfromFauq, Frank Two, JoshF, Anonymous, casagrayson

My brother was diagnosed with stage 4 melanonma on 8.22.14.  No primary.  He just completed his second round of IL2 at Providenve in Portland, Oregon and is awaiting a scan to find out if it is working.  This waiting is proving to be harder than the treatment itslef... Anxiety is high and any positive/ success stories for young males who have dealt with this will help our family get through this next week.  He is an otherwise healthy 37 year old male.  Started to have stomach/side discomfort in August 2014 and found out it was due to melanoma.  He does also have lesions on the pancreas and his eyes.   No brain mets.  Not ocular melanoma. Can anybody relate and share? 

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Anonymous's picture
Anonymous
Replies 8
Last reply 11/17/2014 - 7:32pm

We have gotten his fever down. But now he is in bed all the time he stopped eating and moves his legs all night in his sleep. I got him pain meds yesterday. But is this normal. In three days time he was up to always in bed. He is forgetting things but i dont know if its the yervoy or that hes sleepy. Im getting vary worrired the longest time hes been up is maybe 5 min. He has had one dose of yervoy. Is cancer is in brain lungs bones. Any thoughts? Thanks

Crystale sellers

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RJoeyB's picture
Replies 2
Last reply 11/19/2014 - 3:37am
Replies by: rick1981, Patina

I saw this article about ipilimumab on Medscape the other day and found some of the commentary, especially that from Dr. O'Day, interesting:

 
including the "long tail" durable responses, the management of toxicity with steroids, and the correlation between toxicity and efficacy...  all stuff that's been discussed here previously, but still interesting to read.
 
Joe
 

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